Williams-Beuren syndroom


Questionnaires and Scorecards

Nobody with Williams-Beuren syndroom is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how Williams-Beuren syndroom has impacted your life, how you develop1
When you discover which aspects of Williams-Beuren syndroom impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.

Because if there is something typical for families with a care-intensive2 person having Williams-Beuren syndroom, is that you will see similarities with others having Williams-Beuren syndroom, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with Williams-Beuren syndroom that have approximately provided the same answers to our questionnaires and have similar scorecards.

Het Williams syndroom is een aangeboren aandoening. De oorzaak is een microdeletie op chromosoom 7 ter hoogte van het elastine gen. Het syndroom komt voor bij ongeveer 1:15.000 pasgeborenen en even vaak bij jongens als bij meisjes. • breed voorhoofd • volle oogleden (vooral aan de buitenzijde) • scheelzien (strabisme) Bij kinderen en volwassenen met Williams syndroom dient men ten aanzien van de gezondheid op een aantal gebieden extra alert te zijn. De aandoening brengt op sommige gebieden een extra risico mee. Bovendien gaan kinderen en volwassenen met verstandelijke beperkingen soms anders om met 'klachten'. Regelmatige en gerichte controle kan zorgen voor een tijdige diagnose en dit kan ernstiger problemen op latere leeftijd voorkomen. Het gaat hierbij lang niet altijd om onderzoek door specialisten. De eigen huisarts kan al heel veel doen.

More detailed sections on Williams-Beuren syndroom

We organize our data about Williams-Beuren syndroom in topics. You can browse our topics below. Below each topic you might find more detailed topics with data that might be of interest to you.

  1. ^
    • Your answers and information is yours and yours only.
    • we create a privat space for you only!
    • Your data can only be shared by yourself, not even by us! 
    • your information; you can use it whenever you need it! Often people with Williams-Beuren syndroom are asked to fill in same like questionnaires again, no more, reuse the information you already have in your privat space.
  2. ^
    • care-intensive: people are special, they are not Williams-Beuren syndroom but a unique person
    • care-intensive:A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Williams-Beuren syndroom there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Williams-Beuren syndroom family members are often, (forced to be), the advocate that needs to ask these questions for the better of their family member (or themselves!),
    • care-intensive: a word that we came up with, with which we focus on the experience of the care with Williams-Beuren syndroom rather than the diagnostics.

About the website contents

All of the information contained within this site is for education purposes only. Please contact your doctor to get specific medical advice, diagnoses, and treatment. 

Use of this site is strictly at your own risk. 

WaihonaPedia is a platform where parents and experts share experiences and develop knowledge together. So it is not a knowledge base that is finished: WaihonaPedia is work in progress. 

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